Thursday, March 4, 2010

Can We Make a U-Turn?

With great regret, we must share that Tyler's disease appears to have advanced again.  We went through a full day of testing today, to try to get more information about what exactly is happening and what we can do to fight it, but we are VERY discouraged by this news.

Over the last week, Tyler has had increasing pain in his upper back and shoulders.  As we took a short trip to celebrate our 3rd anniversary, he initially attributed that pain to sleeping in unfamiliar beds.  Unfortunately, the pain got worse each day -- even after we returned home.  We were in contact with our oncologist on both Monday and Tuesday, with the recommendation that we go to the ER if Tyler was in too much pain to handle.  On Tuesday, we finally did just that.

In the ER, we convinced someone to get an MRI for Tyler's back to see if they could see anything that might be causing his pain.  We were absolutely shocked when the ER doctor came in to tell us that it appeared that Tyler had tumors of some sort up and down his spine.  Much of what she said didn't make sense to us, but the doctors there were able to give Tyler some stronger pain medication (compared to Tylenol at home) and he finally got a little bit of relief.

On Wednesday, we got an appointment at SCCA to find out what was really going on.  While there, we learned that leukemia CAN form solid tumors of white blood cells, although this is rare.  We also learned that Tyler's blood test from that morning was showing blasts.  Blasts are immature white cells that don't really go any of the work they are supposed to do, compared to partially developed white cells that are just lazy (more common in chronic leukemias).  In the phases of leukemia, showing a high amount of blast cells indicates that the disease is progressing to the next stage.

With the fact that Tyler's pain increased rapidly over the period of one week and he showed blasts 1 month after his last test at SCCA, this is NOT a good sign.

While at SCCA on Wednesday, we learned that Tyler has 2 tumors along his spine that are causing him problems, although others likely exist.  One is causing the pain in his back and the other is causing numbness in his hand.  Additionally, a new mass has been identified in his upper left chest area.  They biopsied the mass on his chest today, and are talking about radiation possibly shrinking the tumors in his spine.  One concern about getting radiation at this point is that Tyler has already received so much, he might not be able to handle more.  Each body has a limit to how much it can receive.

Thursday's blood test showed even more blasts than the previous day, so it is likely that whatever we do will have to happen very soon.  While we wait for test results and more meetings with doctors next week, please do keep Tyler in your thoughts.  We are both so very discouraged that his journey is not yet over.


  1. This is devastating news. Don't give up, you gotta keep fighting this thing! You are both deeply loved by so many. Let us know if there is anything you need, we will be thinking about you and praying for you.

    Much love,
    Eric and LeAnn

  2. Mandy and Tyler,

    I know Hans via the Ariad trial, and I've been following your journey since before Tyler's transplant. I am absolutely devastated by this latest update (as I know you two are!). Fortunately, you are in very good hands and I know your doctors will do everything in their power to help you overcome this latest challenge. Please know you have all my prayers and support (even from afar).



  3. Dear Mandy and Tyler

    All my positive thoughts and prayers headed your way....... Those are really scary results from all those tests :( I am so incredibly sorry that your road is not smoothing out for you yet and will keep hoping that it does.
    Love and light

  4. I'm so sorry to hear this news. I hadn't checked in with your blog in awhile but got the heads up from Annie's blog. This is very difficult news to read. I'm sending support and strength to you both.

  5. Hi Tyler and Mandy,

    We still read you blog every week and after months of positive news this was a tough one to read. Our thoughts are with you both!
    Big hugs and kisses!
    Mikel and Charles

  6. Hi Tyler and Mandy, I have been away and have not had access to your blog..To be honest I was not only shocked but I was was sad that such wonderful people have to go through more troubled times...I know you are up to the new challanges but it just doesn't seem fair that you have to..My thoughts and prayers are with you, not just today, but every day. Lynda Loland

  7. I am sorry to hear this news. I think of you both often and you are in my thoughts and prayers!

    Christi Sahlin